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Hyper due to a hot nodule

Posted , 7 users are following.

traceysue116
traceysue116

Hi everyone, I was just diagnosed with hyperthyroid after plenty of scans,bloodwork ,etc, Had my needle biopsy come clean as far as no cancer found, I have all the classic hyper symptoms,....tired yet wired!!  Anyway,my first thought after getting my biopsy results was ' great,,,I can go on meds and feel better soon'.   Wrong.   My referred Endoc. Either wants me to do RAI or surgery to remove 1/2 my thyroid.   He claims that if the dose of RAI is small enough to where it will target the hot nodule which is spitting out excess hormones causing me to be hyper,.....and that my chances of becoming hypo after RAI in this case are very small,    Everything I've read about RAI says otherwise,   Why can't I be treated with meds?   Just looking for opinions in hopes someone is familiar with hot nodule treatments,  I'm new to all this, and learning as I go,  I'd love any input from you all,  How many have sought 2nd opinions?ty for any help 

0 likes, 51 replies

51 Replies

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  • lois56337
    lois56337 traceysue116

    Posted

    Hitraceysue116, my advice to you after having Graves Eye Disease for over 3 years, and now am battling with my sight issues, is to NOT have RAI.  I had it in 2007 and now they say it can bring on these eye problems later....  I would NEVER have had it had I known this.  That is just my opinion.  
    • traceysue116
      traceysue116 lois56337

      Posted

      I'm not diagnosed graves,    Supposedly I'm hyper only due to this hot nodule,   Can it still effect my eyes?   Any other horrible side effects your aware of Lois?   Thank you so much   
  • traceysue116
    traceysue116

    Posted

    Adding, and this Endo does not do the surgerys,....he refers patients out to a surgeon, He suggests I go with RAI,   But I'm Leary, I have a couple teens plus hubby and a few cats.    
    • lois56337
      lois56337 traceysue116

      Posted

      My daughter had surgery at 11 years old, no problems, my brother had the pills, no problems, I had RAI I have had nothing but problems.
  • heathercc
    heathercc traceysue116

    Posted

    Hi Tracey- so sorry to hear about your situation. I am hyper w/ graves. I know when you have graves they push RAI a little harder- at least from my knowledge. If there are no signs of cancer I would hold off, at the very least get a 2nd opinion. My doctors- 3 different ones acted like some big rush to get it done, and I scheduled RAI and canceled last minute, its been about a month or two and so far I've been able to manage w/ Methimazole at 5mg daily. I know every situation is different. some ppl say RAI is awful, others it helped them majorly. My biggest advice is there is no rush, take your time to educate your self and then make the decision for you. I think 9 times out of 10 you will be Hypo after RAI, depends on the dosage- I was fortunate to be able to call nuclear medicine (they do RAI in my state) and ask as many questions as I needed. Best of luck!
  • lois56337
    lois56337 traceysue116

    Posted

    Your situation may be different than mine, and I hope you at least get a second opinion before rushing into anything.  It just seemed like they pushed me to do RAI before they even knew I had Graves and I would never do it again without first consulting someone else.  Live and learn, I hope all goes well for you.
  • Nonita
    Nonita traceysue116

    Posted

    Hi Traceysue.I live in UK and have thyroid nodules and Graves.I was diagnosed three years ago and have been on Carbimazole ever since.My hospital doctor has been pushing for the RAI insisting that I can't remain on the tablets but my local doctor says it's OK as long as I have regular blood tests.I understand that they do push RAI because it's easier to treat hypo rather than hyper.I would also suggest that you wait and read more information as being hypo has its side effects and once you have RAI there is no turning back.Have you had a blood test for antibodies just in case it is Graves? Best of luck whatever you decide x

     

  • traceysue116
    traceysue116

    Posted

    Thank you all so much😉 I'm not going to rush into anything permanent . In fact I'm gonna seek a second opinion and keep reading,  There isn't much info out there on hot nodules being treated with anti thyroid medication,   I'm still digging around,     Oddly enough at one visit my endoc. Said I had 3 options....meds,surgery and RAI. He even told me the med used would be tapazol or the generic which started with an M.    It was only when I chose meds that he told me that's not a permenant solution and not the choice he'd suggest to me,  he then said his opinion would be the RAI,     Easy for him to say right!?  
    • calissa
      calissa traceysue116

      Posted

      Hi, I had a large hot nodule and had the same options as you. I opted for surgery. The reason you cannot stay on meds for long is that usually with other overactive thyroid causes like graves, meds can be reduced and eventually stopped but with a hot nodule the module keeps growing so there is never an option to stop thyroid medication and it is a lot harder to keep it under control.
    • traceysue116
      traceysue116 calissa

      Posted

      Thanks Calissa.    Did everything go well with the surgery? Did you only half 1/2 removed?   How are you feeling now?    I'd really love to hear more as I'm trying to make up my mind what route to take,    Are you hypo now?  Thank you!   
    • calissa
      calissa traceysue116

      Posted

      My specialist wanted me to have rai as well. To be honest I was that ill that I wanted the quickest option that was going to make me feel better I also did not want to radiate myself anymore than what I had been because I had had a lot of tests to find out what was wrong with me. I was put on camizabol or what ever it's called to bring my thyroid into range for the op. I had half removed and then I came straight of meds. it took me a while to get better as I was so malnutritioned from when it was over active. It is now 8 months later I am a healthy 56 kg. I was at 44. Feel great. Been back at work for 6 months. Not on any meds. Other half works fine. I am not hypo now. Little pain and pressure after surgery, less that what I thought there would be. Scar has healed well. Hardly notice it. There are good and bad stories to all options 😀
    • calissa
      calissa

      Posted

      My nodule was also 3.5 cms long and 1.8 wide
    • shellyC19
      shellyC19 traceysue116

      Posted

      Hello Traceysue:

      The term "HOT Nodule" is just industry  slang term for a nodule that is over the allowed size of 2.54 cm or less and that this nodule is  growing and causing the gland to over produce a hormone.

      Sometimes nodules come from a family trait, or infections that left scar tissue and of course cancer.  Nodules can be fluid filled like cysts and can also be dense.

      Some of us have them and never knew we had them until an Ultrasound was done.  Some people get nodules on their adrenal  glands, pancreas, ovaries, etc....

      Like I said before RAI is a serious thing, and not a great idea. Calissa's reply was very good and I support it.

      Stay well,

      Shelly

  • shellyC19
    shellyC19 traceysue116

    Posted

    Hello TraceySue:

    My name is Shelly and I am an RN -nurse in the USA.  I have Hashimoto's thyroid disease and 3 nodules.  I know both sides of the thyroid well.

    First of all:  RAI was MADE AND Designed to kill off cancer of the thyroid.  RAI is permanent and it does not just slow down the gland it KILLS it off.  It should not be used to treat nodules.  I have no bone to pick, I am telling you the truth, and your doctor is ill informed!

    Nodules can be excised by surgery and the lobe removed.  If you read on here at this forum you will find people have had a hard time with RAI and thyroid meds do not work as well if you have no thyroid anymore!  It takes longer and involves your Liver and other organs to absorb the hormone. It can be a nightmare for a lot of people who have NO thyroid left.  Half is better than none!

    I would do a few things:  2nd opinion, and see an Endocrine Surgeon for surgery to remove the lobe with the nodule. 

    RAI makes you radioactive and there are restrictions on you for a week or longer as you can transmit this to others. 

    It is a serious decision and you need to think what is best for you!  I would if I were in your shoes, do surgery.

    Any questions, feel free to ask, please keep us posted on how you do.

    Shelly

    My nodules are small and I watch then and do an ultrasound once a year.  I know some people are ill from it and I can understand that.  But not RAI.

    • lois56337
      lois56337 shellyC19

      Posted

      Thanks Shelly, I wish I had your advise before I had the RAI.  Maybe I wouldn't be in the shape I am right now, with the TED and losing my sight it seems from all the things they have TRIED...
    • shellyC19
      shellyC19 lois56337

      Posted

      Hello Lois:

      I know, RAI is a last resort and only if you can't fix it any other way.  I used to think Hyperthyroid was easier than Hypo, but neither is easy to manage.

      RAI is being misued by doctors.  It was never designed to treat Hyperthyroidism.

      Regards,

      Shelly

    • traceysue116
      traceysue116 shellyC19

      Posted

      Thank you ShellyC19.   I'm leaning more towards surgery ATM.  When thus endoc did all the testing and saw me for my follow up he said " you are hyper,....you have a hot nodule causing the extra hormones" ..... Hence the hyper. But your numbers aren't real bad,...but it explains your symptoms.   Which for me are racing heart,..insomnia,anxious or panicky feeling,..a lil weightloss,...maybe 8 lbs over a 6 months time.  I'm small anyway,...I always have been under 120 ,.... And I'm about 112 right now.  I could stand to gain 10-15 lbs but don't want to become hypo either!  I'm not seeing any sense in trading one illness for another.   That's no cure.  Yet this dr. Claims that my chances of becoming hypo after RAI are very very small. Like 18%.        My only question on that outcome being possible is ......does the hot nodule absorb the RAI more readily then normal thyrod tissue?     
    • shellyC19
      shellyC19 traceysue116

      Posted

      Hello Traceysue:

      A hot nodule will NOT absob RAI anymore than another nodule or the gland. RAI if you look it up, was really designed to kill off cancer cells in the thyroid and not nodules.  It KILLS everything off, it is mainly absorbed by the thyroid because it pick up the iodine and it ruins the gland.

      If you had cancer, (which by the way is about 2% a small percentage of cases), then it would be considered better since it would stop it.

      It has it's place but not for nodules!  Nodules or the lobe it is on can be removed. Plus your other half will compensate and you may not need thyroid meds at all.  If you kill the gland off meds are hard to regulate as their is no thyroid left.  You need your own thyroid very much and 1/2 is better than none.

      I have read the horror stories on this forum of RAI and how hard it is to regulate the medication after it.  Plus why put all of that Radioactive chemical in you?  You have it in you for a long while and you can't sleep next to your hubby if you are married.  You have to be under radioactive precautions and follow it carefully.

      Surgery:  They can make a thin cut line and it will heal and fade and nobody will know.

      Yes, your signs and symptoms are of Hyper.  That most likely is that nodule secreting extra hormone, sometimes it can happen that a growth decides to mimic the thyroid. It can happen on the adrenal gland also.  It really is called a "Functioning Tumor" and tumor is a medical word for any growth begnin or cancerous.

      So I disagree with his evaluation of 18% as far as I have seen  RAI damage the gland too much.  It was never designed for nodules.

      If I were you, if you want get a 2nd opinion first.  Then if you have to get the lobe this nodule is on out by surgery.  You will be better off that way.

      I don't want you to be Hypo like I am, and RAI would cause that. Look on the forum here and read some o the RAI posts, very important to know everything before you make a decision so big!

      Regards,

      Shelly

       

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